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Some Say the R-Word, I Say Rock Star

No one ever referred to him as anything other than my cousin, but it was obvious that Waynie wasn’t like the rest of us. For one thing, he didn’t dress like everybody else. Nothing seemed to match; he wore very thick lensed glasses, high-waisted pants, heavy-soled shoes; his speech was a little slurred; and I remember he was in Mr. Alvino’s “special” class in high school.

“Special Education,” my mother had explained softly, with great solemnity

I also remember Waynie smiled a lot.

He just seemed so nice. Friendly and easy-going. Sweet is the only word I know to describe Waynie. And even though he was older than us by at least fifteen years Waynie seemed boy-like, more like us kids in elementary school than someone who was in their 20s and already out in the world.

No one ever gave us a diagnosis of why Waynie was different; we were just told that something happened to him when he was a baby, and it affected his brain, and he was never like the rest of us after that.

Waynie was just different.

He lived with our elderly Aunt Irene in her guest house in the backyard, and he held down a little job “making things” for a “handicapped organization.” That’s how it was explained to us. I can’t ever remember anyone ever using the “R-Word” when they talked about Waynie.

I didn’t hear the “R-Word” until I started going to school. And then, I’d hear it being kicked around the playground with as much ease as a dodge ball making its rounds around the blacktop. It was the “go-to” word whenever one of us made a mistake, didn’t measure up, or just did something that fell short of what everyone else was doing, or what everyone else wanted us to be doing.

It was the worst kind of insult.

That was years ago, of course, and the world has changed since then. But maybe not so much on the blacktops and playgrounds of the world. The R-Word is still thrown around; I catch it at times being tossed off by one kid to another. I don’t know these kids that are using it, so I keep quiet. And maybe that’s wrong. Maybe that’s why the R-Word still has some life in it. Maybe next time I hear it I should say something, and risk being called the B-Word.

I don’t often think about Waynie but he popped into my mind the other night when we were visiting a loved one at an assisted living home. The facility is filled with people on walkers or in wheelchairs, along with those who have Alzheimer’s or dementia. The campus is absolutely beautiful – looking more like a resort than anything else. The people who live here are able to afford the steep monthly bill for such beauty, and I guess you can say, in many ways, they’re lucky. But still, there’s a sadness here for families who come to visit, and so, dinners are oftentimes just for the residents after families have made their obligatory weekend visit and then, gratefully fled back to their own lives and their own purposes in the world. The residents dine only with themselves: table after table filled with grey-haired and stooped-over remnants of their former selves.

When we visit here, it’s hard not to be sad.

Until I look around the room and see Kyle.

The wait staff here is made up of young people – most of them high school students or recent graduates. My husband is a teacher, and some of these young workers were students in his English classes. Kyle was one of those students in a class that was filled with second-language-learners, at-risk kids, and six Special Ed teens, Kyle being one of the six. These are the kids who aren’t the easiest to reach. A population of students that most teachers would rather not see sitting at a desk in their classroom.

But these kids, including Kyle, did just fine.

It’s hard not to think that doing just fine comes with its own rewards, confidence being one of them. That’s what Kyle brings to the dining room of this fancy assisted living facility, with it’s padded high-back chairs, linen-covered tables, cozy fireplace, and piped-in soft melodies of the 50s. Kyle is front and center the grand master-of-ceremony of an evening to remember.

With a smile that lights up the room just because he’s in it.

Tall and proud, sporting a tiny Clark Gable moustache, he welcomes each resident as they enter and leads them majestically to their table. At times, offering a lady his arm – like Fred Astaire to Ginger Rodgers. It doesn’t matter who they are or how they look, whether with an aide, a walker, or shuffling alone by themselves, Kyle is there for them. Helping them to their seat, adding an extra chair or taking one away, making sure the water glasses are filled, the menus are in place. And all of this is done with such charm and care. With a hello and a how are you tonight? And when they answer he listens.

Even if the answer is lost and rambling.

Kyle listens, and nods, and smiles the most amazing of smiles. He makes a little joke, and maybe sometimes, on a good night, they even laugh. He knows which ones are restless and which ones are cranky. And he gives each and every one of them whatever they need. Patience when their mind wanders, and respect when they’re frustrated and lashing out. He is there for them in many ways that families are afraid to be. He accepts each one for who they are – right now – not for who they used to be. Kyle is fine with each and every one of them for this moment in time, this moment only. He’s truly amazing to watch as he works the room with his charm.

Talk about reading something right when you need it! Today I was at an appointment with my son with intellectual disabilities. WE are having a lot of issues with him related to his autism. AS I sat there, the staff of three doctors with the University of WA said they did not have enough time to really tend to our son’s needs. He is high maintenance and they feel like Luke needs more than they can offer. So here comes your Kyle. So sweet and gently and able. There goes three professionals who act as if they do not have the time of day. Go figure. Thank you for making me at least smile tonight after my rough day. I plan to blog about it the incident and what led up to our falling out with the doctors. It makes for a sad commentary on our mental health system.

While I’m happy that my post gave you a smile, I’m pissed about those three doctors. Please write about it and I will link to your post. You are so right about our mental health system and somehow we have to turn it around. We need to spread the word and our first step is to write about it.

Darlene,
thank you. No hurry. I plan to update the situation this weekend with a part two post indicating how disconnected our mental heath system is. Things are really broken. My son’s own clinic does not even want TO BOTHERED on a weekend if he were to be admitted. There is no continuity of care what so ever.

Reblogged this on alesiablogs and commented:
Sometimes it is the smallest of things that makes all the difference. My friend Darlene writes a beautiful post today that touches on the world of disabilities. Thanks Darlene.
Darlene is a favorite writer of mine in the blogging world and has won an emmy for her works in the past.

Nice twist on what could have been a trite treatment. But isn’t that what happens in life? Kyle may be the person who improves Mental Health services; he is improving the mental health of those whom he touches.

Beautifully said. It brought tears to my eyes. It was a lot of food for thought and therefore I copied it and sent it to my siblings in Wisconsin and others. We all have heard the R word among playing kids and have not said anything. Maybe it’s time we do.

I’d love to do an interview with you. Please email frontdoorbooks04ATgmailDOTCOM (email address is spelled out to prevent spam) and request an interview in the subject line of your email. Looking forward to hearing from you!

I was actually just thinking about this in the last few weeks. When I was a kid, we used the R-word all the time. It was the insult of insults. Last week at work, a coworker jokingly called another coworker that. It made me cringe. I had to change the subject, I was so uncomfortable.

Glad to read a new post from you, especially one so beautiful. Hope you are doing well!

Yeah, it’s especially cringe-worthy when an adult uses the R-word. I always figure that kids maybe just don’t know it’s totally offensive. But adults should really know better, and it always puts the rest of us who DO know better in a weird place – Should we say something? How do we say it? Do we just ignore it and feel awful later? For me, the nice thing about email is that it allows me a chance to say something to someone using written words that might be too difficult for me to say in person. I guess I’d just find a nice way of saying it bothered me because I had a cousin who was disabled. But yeah, I know what you mean about feeling uncomfortable at moments like that.

Darlene,
I finally got around to putting a post together in regards to my son’s hospitalization that gives more details. I am hoping to get the word out because this is a chronic condition in our society:

Keep speaking up. There is so much bureaucracy in the system and the only humanity sometimes is found within the families – the mothers and fathers – who intimately know their son and daughter, and who understand their child’s needs much more than the professionals. The key is to just keep getting in their faces – in a kind yet strong way, if that’s possible. It will be exhausting for you so don’t forget to take care of your own needs too. Definitely find a support group and go there, no matter how exhausted and emotionally drained you might be. And by all means, use your blog as a forum to speak up LOUDLY about this system that desperately needs to be fixed, and humanized.

So very touching, sad and inspiring! I linked it on my Facebook. Greece is very backward in social care and very often parents with “slow” children have to immigrate abroad to find proper help. Mario, the son of a friendly family, was dismissed as mentally challenged but when his parents moved to Scotland and he attended a special school he exhibited unbelievable progress.
Thank you

I didn’t know that about Greece. That’s so difficult for the parents of special needs children – What happens to parents who can’t afford to go to Scotland or another nation where help is available? Every citizen must be valued no matter what limitations they might have. Those limitations may be in one area, but in another area they could be rock stars like Kyle. Thanks so much for reading the post and sharing in this conversation.

I have had such bad agoraphobia lately and can’t seem to get it under control. I had it years ago but it seemed to lessen thru time with reading about it. Now I’m back to square one. A single mom and if anyone can give me some help on “how to’s” I would appreciate it. My life is getting more narrow with places I need to go. I am really frustrated with having this feeling. Help

I love the ending to this post. My Grandma is in a nursing home and is 96 years old, but still staying strong. She had two infections not so long ago and thankfully she fought them both, and survived. She is my hero, my inspiration, and one of my bestest ever friends. I sometimes sit with her whilst she is eating her lunch or tea, and with the other residents in the dinning room. I go in the lounge with her. I was laughing my head off last time I saw her. She was saying that the staff are flakier than her cornflakes, bless her. She said some other funny things too. One of the care staff was curious to know about what we were laughing at and I daren’t tell her.

Thank you for giving me such a great laugh – that “flakier than cornflakes” is delightful. And so too is your Grandma. I would tell you to cherish her and also these moments you’re spending with her, but it sounds as though you’re already doing that. How lucky your Grandma is to have you in her life. But I’m guessing she probably already knows that 😉

I am blessed to have her in my life. I just wish I could see more of her but I live an hours bus drive away and have so much work to do. i should be seeing her on Wednesday this week so that will be good. Last time I saw her on the 4th of March she said she was thinking she wished to see me and there I was. She kept saying how proud she is of me and usually tells the nursing home staff that whenever she can. She has a picture of me meeting HM the Queen in her room, and the newspaper piece about me getting the Good Citizen award framed. I have dedicated my new Break through the barriers of redundancy book to her.

Darlene, you scare me on your behalf. When I read your memoir I knew only a big hearted person could have written it. But please be careful. Are all the people you would call “rock stars” as benign as the ones you have already experienced?
One, perhaps sometimes deserving of your title, has lived in our apartment block for years. He ventures out daily to lecture people in the nearby streets on assorted topics, often related to Hell, or to denounce one thing or another. Strangely, the one time I was confronted by him was a few minutes after reading your latest blog entry. I had gone out shopping and found myself suddenly face to face with him at close quarters in the street. I froze.
He threw up his arms. I became cemented to the spot. Prayers I had learnt in childhood in Arabic and Latin ran through my head. Would I be denounced? Would he be violent?
No. He smiled. He addressed me by name. “Uncle,” he said and hugged me and passed on.
I reckon I was lucky. He happened to be in a benign mood. I have often heard him in other moods from hundreds of yards away. Please be careful.

First of all, thank you for your concern. I admit that in the past I have been known to rush out the door at the first sign of a problem, loud noise, or an unusual sight/sound/activity. But with age comes wisdom (God willing!) and nowadays I do try to take a moment to size up the events before taking a step forward. Having said that, let me assure you that the “rock star” I wrote about in my post is employed by the assisted living facility, and he’s a pretty stable fellow. While I’m not a doctor, social worker, or mental health professional, the person you write about in your comment sounds as though he might struggle with mental illness. That is not the “intellectual disability” that I talk about in my post or what used to be called, “mental retardation” many years ago. The “R-word” that I wrote about is the archaic term, “retarded.” Waynie was never violent or emotionally explosive, and although I don’t know Kyle as well as I did Waynie, I have seen no behavior to suggest that he is like the man who lives in your apartment house. But I do thank you for asking me to “Please be careful.” I will most certainly remember these words and your kindness for sending them to me.

A wonderful article! I believe that we all have a unique gift to share with the world. Sometimes it takes a lot of effort and understanding on the part of others to uncover it. It sounds like Kyle found just what he needed.